Why did I listen to Hospice?

[MartyT]

 

10 minutes ago, kayc said:

Please don't judge families that use facilities, sometimes they're necessary

Yes, Kay. Once again, we need to remember that every situation is different and unique to the individuals involved, and we must be cautious in making statements that can feel very unkind, judgmental and unfair. We simply do not know what it's like to walk in another's shoes or to live in someone else's life.

[IsThereHope]

ALL opinions need to be respected.  And my opinion is that yes, it's a big sacrifice to care for an ill elderly person at home.  Some take on that responsibility (whether alone or with caretakers/nurses/volunteers assisting at the home).  Some do not, for whatever reasons they may give.

[MartyT]

Your opinion is respected, my friend. But we must acknowledge that for some, caring for an ill elderly person at home is much more than "a big sacrifice" ~ it simply is not possible, and it is not for us to pass judgment on them.

From one who has worked with seniors for nearly 20 years as a licensed professional counselor, certified gerontological counselor and certified geriatric care manager: 

"Unfortunately, even the best, most loving and well-meaning caregivers cannot provide safe and adequate in-home care for chronically ill parents or grandparents indefinitely. The quality of care will suffer, the caregivers will become overwhelmed or unable to maintain their other commitments, or there will be a crisis that cannot be managed because the caregivers' energy and resources are depleted from constant caregiving.

Adult children often make mighty efforts, and are willing to forego their own lives and endanger their futures - but the strain usually will defeat their best efforts.

It is unfair of the parents to make this demand of their offspring, and devalues the value of their children's love and concern. Out of love and true concern, a solution must be found that is the best for everyone in the family, not just the parents.

If there is not enough money to fund paid caregivers, then care can be found in a nursing home that is reimbursed by Medicaid. That is what this federal program is for. It is not ideal. But it does allow for the adult children to have a life, to care for their own children, and to keep a job that will help fund their own old age.

Once physical needs are met by the staff of a nursing home, quality needs can be lovingly met by the adult children and other family members, friends, and neighbors. Remember that your parents are not likely to improve; most chronic illnesses worsen with time. This means that providing care will become more difficult, even as your energy and patience gets lower and lower. Caregiving is exhausting, both mentally and physically.

You are your parents' best assets. Take care to preserve their assets. Believe it or not, you will not always be there: caregivers who are over taxed are at higher risk for accidents, falls, illness, depression, and other forms of burnout. If you are too tired, who will cope with the next emergency? The responsible thing is to find a solution for the routine care you are providing now, so that you can provide the quality of life care that makes life worth living, and still have the energy to cope with the next crisis, and the one after that, and the one after that. Take care of yourself."

[kayc]

[Patty65]

Dear Sallie,

Yes, I do.  It's been a month for me today since my husband died and I'm reeling, and my anger -- if you can call it that, I don't do anger well -- is falling on Hospice.  He was in in-patient hospice for 23 days. Half way through, he reached to push the nurses arm away because it hurt, her cleaning him.  That was not ok behavior in their eyes, and they wanted to put him on Haldol because of it.  I refused to let them, it was a big ordeal.  I wrote a poem, this is a verse -- afraid to share the whole thing, its kind of intense...

 

It was only me fighting with nurses in a strange land called Hospice

Couldn’t they see he didn’t need antipsychotics?

Couldn’t they see he was just frustrated and felt robbed by his body of even the simplest dignity?

 

I know hospice - the concept -- what they do -- is good.  But I also have to honor my feelings now.  Not all doctors and nurses are the same. Witnessing the revolving door of death, waiting for our turn.  It was horrid.  Nobody in my life knows how horrid.  They did in my case go to meds too quickly for us when they, and I, needed to pay more attention to how and why he was reacting to things there.  

The last day, one month ago today, they started with the morphine.  They said it was small doses but I was in no shape to figure that out.  They said the way he was breathing they thought he might be in pain.  So they gave it to him, and his breathing was the same, but the doses kept coming.  And I wonder.  

But I know it wouldn't have changed the outcome.  I don't know if he could have lived a few days longer. And I know I don't know how to express the anger of the unfairness of Ron being gone so young and so soon, and I know hospice is getting the brunt of it in my own head.  There were some nurses that shouldn't have been there. But I also saw at the end that I could have never been able to provide what he needed on my own, and I was not eligible for home hospice because I had nobody to care for him 24/7.  And there were some really caring people there.

But my therapist tells me I have a right to all those feelings.  I can hate hospice right now.  I shudder thinking about going near the place, and I feel guilty because everyone I've ever talked to, up until I saw your post, has only wonderful things to say about them. Thank you for helping me not feel alone, I've not talked about that outside of therapy, and even there, not so much yet.

 

 

[kayc]

Patty, I am so sorry you had bad experience with Hospice, doctors, nurses.  You're right they are not all the same.  I find we are our loved one's biggest advocate and my brother and I were that for my mom with all of the staff and medical personnel she encountered.  I live about 65 miles away from where my mom was although I worked in a nearby town, but thankfully my brother lived in town.  

Your therapist is right, you DO have a right to all of your feelings!  And it's okay to be both grateful for the help and questioning of it at the same time.  You are not alone in how you're feeling..

[MartyT]

Patty, my dear, I'm so sorry to learn that your hospice experience was not what you wanted or expected for your beloved husband.

This is taken from my blog post, When Hospice Care Fails A Family, as I want to say the same thing to you:

Unfortunately, of course, not all hospices are the same, and not all of them adhere to the same high standards of patient care. As a grief counselor who served with the bereavement staff of an outstanding hospice organization for 17 years, it breaks my heart to hear horror stories like yours.

Have you considered contacting the hospice that served your husband and asking for a meeting with the administrative and clinical personnel, so you can get your questions answered and your concerns addressed?

If you haven't already done so, I want to gently suggest to you that this could be a very important first step in your own healing process. You may not feel ready or able to do this right now, and if that's the case, I ask only that you think about doing it, maybe some time in the future when you feel stronger than you are feeling now. I know that when something is not right about the care a patient receives at the hospice where I worked in Phoenix, Arizona (Hospice of the Valley), the administrative staff and the clinical staff stand ready and willing to meet with the family to discuss and resolve whatever issues may exist. The philosophy behind that policy is simple and straightforward: It's the only way we can fix things that may go wrong. First we need to be made aware of the problem, then we need to investigate what went wrong and do what we can to fix it, so that at the very least it won't happen again to another family.

When you feel ready to do so, I encourage you to consider writing or calling the hospice that served your husband and asking for such a meeting. You might think of it as something you can do for your husband as well as for yourself -- and for other families who will use this hospice's services in the future as well.

[Patty65]

Thank you Marty and Kayc.  I will think a lot about what you said, Marty.  The hospice he was at was 5 minutes from our business, and now I have to drive by the house (it was a hospice house) he died in on my way to work every day.  Or, when doing other work errands, I drive by all the cross roads I took to get there and I get very anxious and shake.  The counsellor, when she heard my "story" about the business falling apart and various things going wrong there on top of all of the time away from home living at hospice and watching others die, she just shook her head and smiled and said she didn't know what to say.  The one thing she did was drive me to the business the morning my car was stolen from hospice.  Shaking her head and saying basically my problems were too big for her -- oh I felt so hopeless.  One of the first days there, a nurse mentioned in passing that they gave ron morphine because he had discomfort when they were changing him.  How could I be his advocate if they don't tell me what they are doing?  They told me they would consult me before meds, ron is so sensitive to them.  The night before he passed, he was going downhill, and I didn't get there at lunch because my stolen car was found almost totalled, and I had to deal with it before I had to teach a 5 hour class. That stressed me because  I was the only one who could feed him, get him to eat.  They told me theday before they would talk to me before they were going to start any meds. But I got back there, they had given him more morphine because of his breathing.  They promised to tell me first!  They had JUST promised me the day before! The same nurse that said "he grabbed my arm and that is NOT OK we want to give him Haldol" a couple weeks before confronted me the night before he passed. (OMG ron was the gentlest soul, he would never be combative, and he wasn't I witnessed it) Right at the front door at 9:30pm after my class. Theres changes in ron, she said.  I know. I said.  I knew him more than intimately and I saw every minute change.  She brought me to the family room and told me all the changes. I know I know I know.  Fighting tears, I was not going to cry in front of HER. I just want to be with him I was thinking. Let me go. I just kept sayiing "OK" so she would let me go.  She followed me in his room and pointed out the changes.  Oh god, I know!!  

But just a few days before I had sat down with the house leader nurse, and I asked what to expect.  He told me, compassionately, everything.  He was responsive to my reactions to what he was saying. I actually didn't mean the process of dying, I meant how would they stay in contact with me as things got worse, but I wasn't clear and he told me things I needed to know very gently and caringly.  In those last hours, what he told me helped so much. I am so so so grateful he was the one who was on duty when ron went.  He really cared.  He let me wash his body with them. And the doctor was wonderful and really listened too, but she was not around, she was doing all the home visits too.  But anytime I needed, I could contact her.  Maybe not many people live there so completely as I did, I was there 16 hours a day with two four hour breaks to work, but the trauma of seeing so many others pass away is haunting me.  There were only 7 rooms there and the rooms were close with doors open mostly.  They would come in walking and talking and they would deteriorate so quickly. Then they were gone, and we were next.  And the laughter of the nurses from the living room all night long.  I get it -- I worked in a hospital when I was young.  I know that kind of heaviness they have to have that outlet.  But the laughter hurt and made me feel so alone. Their motto is "It's all about Life".  But its not.  It's all about dying.  It should be, "its all about loving" or something that was actually supposed to be happening.  I would get massive bloody noses there.  And high blood pressure which I've never had in my life.  

Again I hope I haven't said too much here. Afraid of losing this too I guess.  But it just came out.  Maybe one day I can tell them all this. I will consider it Marty, so they know to make it better for others.   I will save what I wrote here.  But I think I need to process this with my therapist one day soon first, since it is haunting me.  A lot of this could be the grief.  I have no perspective.

Thanks for listening

[kayc]

Patty,

I am so sorry that this was your experience, it should never be like that!  I do hope you share with them what you've shared with us, those in charge need to know in order to ensure changes are made.

[MartyT]

I assure you that you "haven't said too much here" ~ and you are not about to lose us, Patty. We are right here beside you. 

There is absolutely no rush, dear one. You can share your experience with the hospice house (or not) only if and when you feel ready to do so. This was only a suggestion ~ not to pressure you in any way. As you say, right now your perspective is colored by intense and early grief. Perspective changes over time. You will know if and when that time comes.  ♥